From about age 6 I had always been playing football (soccer). It dominated my life for the next 15 years or so and I was quite happy to allow that. My time on the field started to wane when I began traveling the nation for my ex employer IBM. Six days a week on the road is not conducive to exercise or organized sports and as a result I gained quite a few kilos. I think I weighted over 90 kilos at one point. (multiply by 2.2 for your inferior “standard” weights system) I decided this was not acceptable and decided to join my friends in triathlons to get back into shape. It was at this time (two years ago now) that I found out that I had to give up football for the rest of my years as those trixsy doctors diagnosed me with osteonecrosis which translates to BONE DEATH!
Osteonecrosis is when your bones have a restricted flow of blood and they are unable to regenerate themselves. All the time your bones are dying and rebuilding, but alas, mine are not. For me it is located at the top of the femoral head inside the hip joint. A good summary can be found at http://orthopedics.about.com/od/osteonecrosis/a/hip.htm. There are much more sites talking about this subject but none really go past the information explained here.
When I ran, I could only last about 20 minutes before I had some serious pain start in my hips. I thought it might be a hip flexor problem but it felt more internal. I went to the doctor and told him the problem. I had X-rays, then MRIs, then more MRIs, and initially I was told that I had torn a ligament inside my hip joint called the ligamenteres ligament. This ligament is used while you are an embryo to supply blood to the legs but is not used once you are fully developed but still remains. They decided on arthroscopic surgery to remove this ligament and all should be solved. I was in and out in a day and I thought my life would be back to normal. I went to physical therapy every day for about 6 weeks at an amazing place called Orange County Impact Rehabilitation which is run by a marvelous person by the name of Willis. During this time I would get stronger and stronger but be sure not to do any real exercise outside the clinic. This was hard for someone like me to do and I started to run again after a few weeks. After which my leg would be extremely sore and I would have to go to Willis and tell him what I had done and he would shake his head in disapproval and we would start again. 8 weeks went by and no real improvements and I went back to the doctor. More MRIs and it was now apparent that it was not the ligament but indeed it was osteonecrosis. On the MRI you could see a dark quadrant in my femoral head showing dead bone. I was crushed as this was exactly what I did not want to happen. I had done my reading and knew there was no cure and the ultimate solution was a hip replacement.
My doctor was one of the best in Orange County and his words to me every time I went to see him was to just go for as long as you can and when I could not bare the pain anymore, they would look to surgical solutions. They will not give me a new hip since I am too young and would likely need two or three replacements in my life due to current hip replacement technology. Other options are to have holes drilled in my femur to promote blood flow or even take shin bone and inject it into the hip bone. All of which have below 40% success rates. So what the fuck?
Now I can just get an X-ray and the problem can be seen. I prefer MRIs really since I do not enjoy laying under an X-ray machine that is several inches away from my man tools and zapping away. It does make for a funny moment when I am with the doctor looking at the X-rays and he is pointing out the affected area and there is a very clear image of my penis he is trying to ignore. Did you know that one air plane flight is the equivalent of 15 X-rays? So I was told…
As for how it was caused, they do not know. Steroids? not likely. Alcoholism? I drink but no where near enough or for long enough to be considered an alcoholic. Blunt impact? Possible but who knows when that would have happened. I started to notice hip pain at university during my 8 hours a day of playing football with the collegiate team. Maybe it was too much for little old me.
But not to be held down, I have adjusted. Evident in some of my past blogs, I have picked up cycling in an extreme way. I ride at least 100 miles a week and try to race regularly. Thank you to Willis for encouraging this past time. I find that if I do not cycle, my hip will start to hurt again so I long for many hours on my saddle when I have been away from it for even several days. I also swim quite a lot as well which causes no pain. Basically I cannot do anything that gives my legs a lot of impact. Yoga can be very nice as well and I stretch everyday. Even walking can be a bugger sometimes. I have always been a fast walker and love to be that guy knocking over people as I squeeze through crowds but I have toned down my pace to avoid enduring pain.
My weight is back to a modest 75 kilos and I feel great. I do not look forward to the days ahead when I will be a cripple in a wheel chair trying to play tennis or volleyball but I will deal with that when it comes. For now, I just wait for medicine to advance. Maybe I will end up being one of these guys riding a hand powered bicycle…
pobrecito!!
I was diagnosed w/ osteonecrosis july 1
July 19, 2009 @ 11:45 pm, Atlanta Georgia usa, 1 yr w/ osteonecrosis in my hips and 6 mos w/ l-hip replacement. r-hip probably coming up next. knee arthoscopy plica lining repair, mothers day 2009, now august L- knee meniscus repair. I work out pool therapy for 1 hr, 3x wk, gym w/ wght and treadmill 10mins 3x week. Was a nurse working and started limping last july 2008. thought i pulled a muscle. not that lucky, like my new hip, no pain. there is some pain starting in r-hip. make the best of activity, i have lost 5lbs 2 wks, keep strengthening, and moving as much as possible. no history for causes. unknown cause for me, 48 yr old female. I was a dancer. miss dancing. started journal writing for therapy. please email me mpp12@msn.com m.liz
will try yoga and oh, please do try water pilates and water fitness, it is great.
i am now a water girl and upper body work out, and recumbent cycle helps.
Impressive M. Liz, keep at it. Anybody who would like to chat about this please feel free to email me at ollett at gmail.com .
Something I found while doing research for this is that the communities and associations are absolute rubbish. I tried to join the AVN association and got no response. As I mentioned the reading was not all that great and tended to be very repetitive. I even purchased a PDF document, something that goes against all my computer morals, which was not all that great. It was about bone grafting from shin to hip if anyone wants to read it.
Tour de France winner, then loser, Floyd Landis, had osteonecrosis. He may not be the ideal spokesman since steroids is a direct cause of this they think, and he got his victory removed from him after being caught with steroids. None the less, he WON the freaking tour de france with two shattered hips that he had replaced immediately after the race!
I’m in the unusual position of being a medical doctor (not orthopedics) and diagnosed with bilateral idiopathic avascualr necrosis (meaning both sides and not sure why). Like you I was a runner and also a hiker/backpacer. Not sure when all this was diagnosed or what stage you are in but in the early stages the vascularized fibular graft has a much higer success rate that that when done by a team that does it frequently. I had both hips done at Duke in 2007 and although it was tough I am pretty much up to doing anything I want. Admittedly it is not always successful but potentially worth consideration. There are limits in terms of age and certainly less successful with advanced stages.
Thanks Henry for that amazing comment! From my reading, it sounds like the guy at Duke is dominating this arena, I think he even wrote the paper that I bought regarding the grafting. Can you tell me more about your experience with this procedure? The before, the after, how long to recover, the extent of your activity now, anything recurring, etc? I would say I am very early onset of AVN since I can do all the things that I do. I am 26 so hopefully the age thing is not an issue either.
From the commenter Henry which I think is very wise and valuable information. After reading the website I have concluded that I keep trucking on until I cannot reach 45mph in a sprint anymore….
Sorry to hear about your diagnosis. I was considerably older, 46, at diagnosis. That was two years ago. They will not do you if you are over 50, or have sickle cell and a few other exclusions. When I was considering the surgery they were able to give me a prognosis based solely on x-rays. They do better than anywhere else as they started the procedure and had done 3000 or thereabout when I was there in 2007. If you have not had any collapse of the femoral head your prognosis is reasonable but, admittedly, not 100%.
It is a big surgery with a long recovery. Mine were done at 3 month intervals and there was 6 weeks non weight bearing followed by 6 weeks partial weight bearing after each. I started working out formally with a trainer (biking is fine and encouraged) even while I was on crutches. Even then it was a year before I was pretty normal and two before I felt mostly right. I still have some pain (variable and not intense and nothing similar to the original pain) but have recently gone on a backpacking trip, going up to ten miles in a day! I have not really tried to run but I will be honest that I am not really sure that is an option for “me”. I still work out religiously and I can do very well on an elliptical trainer, spin bike and briskly walking on a treadmill. My orthopedics (local and at Duke) have said I could do anything I wanted to. I do know that people go back to running. I am not so sure about soccer as you will no longer have a fibula and the inversion and eversion of the foot would probably not be as good as before but I suspect no real reason you couldn’t try if all went well.
From my perspective what your real goal should be is to avoid or at least delay hip replacement for as long as possible. As you are aware they don’t last forever and you don’t want to start that process any sooner than you have to.
Dr. Urbaniak who pioneered the surgery and who did mine has retired for the second time. He was clost to retirement when he did my operations but my understanding is that there are four surgeons anyway. Two to harvest the fibula (ouch) and two to prepare the graft site. His protégée Dr. Aldridge is still there and has a good reputation.
The Duke patient information is found at http://www.dukehealth.org/HealthLibrary/CareGuides/Orthopaedics/patientresources/fvfg/fvfg.pdf and, no, I am not in any way affiliated with Duke nor do I have a vested interest in promoting this surgery. This would be something to be weighed very carefully and approached realistically.
Best of luck with all this.
Sorry to hear about your diagnosis. Hip resurfacing could be helpful to you. Floyd Landis had this done, which does not get rid of your whole hip and may let you be active in many ways. Just an FYI: Landis took corticosteroids during the Tour de France, because of pain. But bicycling officials were aware of this. He had a femoral neck fracture years earlier which was very likely the cause of his osteonecrosis. His testosterone to the hormone epitestosterone (T/E ratio) was too high, and that’s how it was found out he was doping. But this doping did not cause his osteonecrosis.
Check out this link regarding the Birmingmingham Hip Resurfacing:
http://www.birminghamhipresurfacing.com/ and this other where it lists physicians experienced with the procedure: http://www.surfacehippy.info/
I have considered this myself, but I still haven’t had kids and some physicians do not recommend metal on metal resurfacings for women of child-bearing age. Good luck and keep cycling. I’m personally saving for my first road bike.
Hello, I am a 49 year male, also quite active as a youth and adult. Two years again I began having knee pain and was diagnosed with AVN. 15 months ago I had a double hip replacement at Stanford.
I still experience intermittent pain, like a level 8 Charlie horse, about 3-4 steps from a seated position. This pain sometimes lasts for hours and varies in intensity.
After the surgery, I was also diagnosed with pinched nerves at the L4/L5 and had cortisone injections at the sites, which did little. I since have found a more holistic chiropractor who has helped a lot. I am not sure if I should intensify my workouts or not.
In this blog, I noticed two people mentioning that after 2 years of surgery, they are doing better. I hope this pain diminishes soon, so I can return to a more active life again, as well. Any words of advise would be great appreciated.
Best wishes to all of you out there.
I think some of the other commentors could provide more than I can. But I cannot emphasize enough how much cycling has helped my pain out. In fact as long as I am turning the pedals, the pain does not show up. Pick something that you find therapeutic, and stick with it.
hi, i developed bilateral avn as a result of steroids. iv tried alternate therapies for around 15 months now, im considering surgery now and will be discussing it with my doctor soon.
as a patient id like to say that ayurvedic treatment really helps, even after surgery for those of you who still have pain do try ayurvedic treatment if you get the chance.
cheers!!
also i developed a mild stage one necrosis in my right knee which has been taken care of with ayurveda alone. its perfectly fine now. anyone who is looking for an alternative to surgery should consider ayurveda (preferably in india)
Interesting Vivek. I have never heard of Ayurveda until your comments. Seems interesting and as plausible as the high tech medicine that is shaming me right now. Do you have anything else to share about Ayurveda?
Experienced Ayruvedic practitioners would likely be hard to find in the US but holistic medicine can certainly compliment “Western” medical approaches. As noted in my previous entries I am a physician who had bilateral AVN and underwent bilateral FVFG in 2007. After each surgery I had several sessions of Rekki which, for whatever reason(s) seemed to help me to feel better and stronger physically and emotionally. For anyone wanting to learn more about Ayruveda there is a radio program called “The Peoples Pharmacy” that devoted an entire show to this practice. This was an interesting introduction. It is radio show #748 and can be downloaded off the web. Also, don’t forget accupuncture (particularly you, REZ, which can also be very helpful for pain.
ayurveda is a form of herbal healing. the treatment itself involves regular massages with medicated oils and some herbal syrups.
ayurveda is native to india and is being practiced here since centuries.
it can treat almost any ailment.
it will also help post opp for better and quick healing and also with managing pain.
like doctor henry says it may be difficult finding a genuine ayurvedic doctor in the us but if anyone want to come down to india there are some really good doctors who can definitly help.
as for rez i suggest you try sujok acupuncture if you can it helped me greatly in my initial avn days
also i have just started a blog about my experiences with avn. heres a link. http://avascular-necrosis.blogspot.com/
I am a MD diagnosed of idiopathic bilateral AVN (2A and 1) of femoral head. I am searching for non-surgical solutions to this disease. So far I am trying HBO treatment. I will also implement ayurvedic remedies to it. I have seen a person who is completely ok without any surgical intervention. He was 2B or worse as far as I understood and advised of total hip replacement 5 yrs ago. I recommend to be positive about the outcome of the disease, I think this also matters. This guy has never accepted to become restricted and he succeeded. By the way he took Glucosamin and NSAIDS. I wish everybody total freedom. Please post here if you learn anything that will help others.
I was diagnosed with a vascular necrosis of the hip and am having a total hip replacement on March 23, I also have nerve damage in my L5 and S1 nerve areas of my back . I am 50 years old. My pain has been horrible and sleeping has been a no win situation. Cane, crutches,walker none of which seem to help. I am on pain medication, but I am getting no relief. I want to cry it seems alot. I also have these miserable cramps in my legs and feet. If anyone has any solutions to help ease the pain, help with the cramps, and how to get rest PLEASE tell me.They say a major lifestyle change is needed, but did not say how to make and what to do for this lifestyle change. I have searched on the web to find answers,but I must not be looking in the right places. Your help is greatly appreciated.
@gammawroxie,
I have been dealing with avn of both hips for well over a year now and i have tried a whole lot of things. The best i have found is Dolo 650mg its a painkiller.
As far as lifestyle changes go im no expert but try to cut down on salt,spices and diary. It may be difficult i know (im indian) but it helps.
Also, iv been told that avoiding meat helps, but i dont know if it works coz im a vegetarian as it is.
@Gurkan,
There are many alternatives to surgery but how successful it will be depends from patien to patient.
Ayurveda id say is your best shot at non surgical options.
Id really like to know how far HBO treatment has helped and also what treatment did the guy who fixed his avn without surgery take.
Has anybody heard about chinese herbal medicine called Osteoking for AVN?
Just found it by googling… Anybody has any kind of experience with osteoking?
please let me know ..
Thanks
I may be in the wrong place, but I have been diagnosed with osteoneucrosis of the Jaw 2 weeks ago. Due to mets. breast cancer, taking Zometa IV once a month for over a year. Also 10 months ago I had a tooth pulled. 2 weeks ago I had a what I thought was just a gumboil. Then I began to feel bone in the area. Went to the dentist who immediately sent me to an Oral Surgeon, who took many pictures and started me on some kind of mouth wash and amoxicillin. I have so many unanswered questions!! Most importantly, how long will I be able to work? How long does this go one til it has exposed all the bone it’s going to? I keep reading about “coping” with ONJ. What exactly does that mean???
Excellent Book that helped me. I have AVN l-r hip, total hip replacement 2009 and 2010. I am 90 postop for the r-hip. The Book “You can Heal yourself”by louise hay and There is only NOW by scott morrison.
I am doing fine, working out at the ymca treadmill, elliptical, pool therapy, upper body toning, and stretching. Small amount pain occassionaly. Idiopathic DX: AVN. This is a life time of adjustments. No Cure. Redo or Reundo to do. No Cure yet. THR gives quality of life for me to do my daily activities. Write your story some where. We are 1% of population to get AVN/ON. WOW!
my doctor web site
Patient education
click on body part
read info
clickon another body part
treatment plan, physical therapy to do.
Excellent Websity
Hi ive been diagnosed with avn of the knee mine is in the last stages but my age is against me as im only 41. I cant walk far now i miss walking my dogs and doing the things i used to do. I have to walk with a stick just for short distance now. I had one operation last year which was not a success my knee as totally collapsed now and the specialist in the uk dont know what to do. My knee is very painful as it locks and i have to push my knee back into its joint. Im told my knee is very serious does anyone have any advice for me as i just want to get back to myself.
Sue, to be honest, your situation sounds bad and I wish there was a magic cure for you but I think for all those that are here reading this page, we have reluctantly come to the conclusion that we have been stuck with something that we cannot get rid of, merely cope with. Ultimately, I think the common theme to a lot of the comments to this blog and the blog itself is that for each person, there is a way to live within your confined situation. For some, it may be more confined than others. Sue, my dad does not have AVN, but he did have a completely new knee put in after some lingering problems after a motorcycle accident. He walked out of the hospital two days after the surgery and has never limped since. Do not fear, but embrace and conquer. Shitty answer I am sure you are not wanting to hear, sorry.
My solution to this damn nuisance of my life is cycling due to it’s low impact. Swimming for cross training. Either of these work for you?
A quick update from the author,
Hi i would love to do cycling but my knee is limited in mobility and i can not bend it enough to use a bycycle. They told me 15 minutes of swimming thats all im allowed. As for a new knee they told me im to young and said to try and wait as long as i can as the more knee replacements i have in the future they said there may not be enough new bone to put a replacement on to and i would have to have a knee fusion something i would not want as i would never be able to bend my leg again. So im in catch 22. Im going to buy myselve a scooter so i can at least get around and take my dogs out.
Hi!
My name is Angela,39 years old, mother of 2 sons, and live in the Holland (The Netherlands). Via facebook I was linked tot this page.
This is my story:
I was diagnosed in november 2008 with AVN in the metarsal bones of both of my feet. Cause unknown. After 1,5 year non-operative treatment, they now operated me in May last by making hole into the bone, hoping that new bone will grow via the wholes to the gap what was made in my joint by the necrosis. They do not know what to do with me, they never heard of necrosis in the metarsal bone of the foot before.We now hope for the best that new bone tissue will grow. In Holland I did not find any case of AVN in both feet.
I am looking for AVN patients who have or know cases of AVN in the feet.
Regards and the best for you all
Angela
@Angela … To be honest, you are the first I have heard or read about with this problem in both feet. Ouch.I suppose that from your response that the hole drilling is not going so well? Did they mention about the technique to graft bone in from somewhere else?
Hi Luke,
Thanks for your reply. Oke, heard that before…umpf..I am one of a kind ! How nice this is…..
The technique of the hole drilling is something my orthopead tried. I asked him about grafting bone from somewere else,because I’ve read about it in many US documents.But he never heard about this as a treatment for the feet. So I do not know if it is done…. It will last months before they can say if this surgery has results. New bone tissue has to grow, if not, they will get te joint out and fixate is, so that is my last station here in holland……..
Hi there, like Luke I was also diagnosed with AVN at 26 (I’m 27 now). I’m just getting back on my bike (physically and metaphorically) now as was a keen cyclist and runner. The symptoms built up very gradually for me (over 2 years or so) eventually I couldn’t cycle without pain and decided to go to the doctor. I’ve not done any exercise for months and looking back I think I realise I was quite depressed about the whole thing (I even sold my beloved road bike). I’m cycling again now though and although I realise I won’t be as fast as I was I can do enough to be happy and Luke is right, keeping it moving seems to make it less painful.
Part of me would like to have resurfacing or a total replacement now so I can have the next 15 years pain free and enjoy the prime of my life…
ditto with Luke about doctors asking about steroid and alcohol abuse.
Hi All!
In 2007 I was diagnosed with FSGS of the kidneys. The Doctors then decided to put me on treatment with steroids(Prednisone). I was on it for 6 months. Did more damage then anything else, I even tried to persuade the Doctors to take me of this medication, but to no avail.
I was seen at an Academic State Hospital which means you are seen by Student Doctors. It was never mentioned to me the repercussion of using steroids.If I was informed about it, i would have refused it. A few months later I was diagnosed with AVN of both hips. I was like 27 at the time. Had a decompression done which helped, and 2 years later the disease is back. This time with a vengeance. Orthopedic Specialist said I have two choices, either a hip replacement, or make peace with the disease and live with it as long as I can. Both options will have it’s pros and cons. If I go for hip surgery, I will have at least 2 more surgeries which might not be successful. If I don’t have surgery I will live in pain and will not be able to do most activities. Currently I’m using glyco-nutrients and some other supplements. Seems to take away the pain and inflammation. I do have some good movement with the hips. I hope for the best, and wish you all the best, as I know it is not easy to deal with this condition.
Well ain’t that just the bitch? I must say that sometimes I get quite angry with my future even though it hasn’t happened yet knowi ng that my bones are walking the death route.
I was told that if I get surgery that I would be able to run properly again. But when idelved Into it more, the doctor finally told me that that may be the case but it depends on what I was used to. I was highly competive in soccer and am now highly competitive in cycling and competing at high levels in both sports. To get surgery now would mean that I could run but not play soccer like I used to. It would also mean that I would not be able to cycle like I do and I would have a long post surgery recoverytime and I would be paying shit loads of money and I would have to be getting more surgeries down the road. So I am happy towait this out until I am at the point if some of the commenters on this blog.
To everyone who has left their experience here, thank you. I wish I had more to contribute to this discussion other than I feel for each and everyone of you. I recently had a clandestine X-ray here in chile and was able to clearly analyze my own X-ray as the dead bone is growing. Oh well.
Hi,
I was diagnosed with cancer 3 years back and started my chemotherapy, to keep my body from breking down I was prescribed PREDNISONE (the evil bitch). I was on steroids for a whole year. I put on 20kgs and at the end of a year when I finally got done with my cancer treatment i was diagnosed with avascular necrosis (AVN)in my left hip.
I started exploring all my non-surgical options to treat avn, three month onn BOOM the other hip gets necrosed as well. For a whole year after this I tried all available non-surgical treatments.NOTHING HELPED.
After 18 months i finally went in for surgery. on 14 june 14 i had my right hip operated. Even though i have some restriction from my left hip i can feel a world of diffrence and its not even been 6 weeks from the date of surgery.
Anyone who is putting away surgery for whatever reason, it’s not worth it. The pain the discomfort no good is ever to come out of it.
@ Brad.
I got a metal on metal hip resurfacing, but before the surgery I got a kidney test done to check that they are functioning well and will have no problem in eliminating the metal ions released by the implant into the blood stream.
The doctor had suggested that if my kidney function was not upto the expected levels I could have a ceramic implant and avoid the problems of metal ions all together. you might want to look into that.
All the best.
Hope it woes well.